The current study assessed the degree of depression and psychological burden in caregivers of children with chronic kidney disease compared to caregivers of healthy children. Those caregivers are usually relatives and family members who volunteered to care for the ill child; hence, their responsibility lasts till the end of the child’s life, which will affect their lifestyle and daily routine for a long period of time.
Sociodemographic data of caregivers
Regarding the gender of the caregiver, female caregivers represented (90.0%) of the cases and (73.3%) of the controls in our study; this is explained by the fact that women are more concerned about the well-being of the people they provide care for. They also tend to be more emotionally attached to their children as well as the socio-cultural norms that put the responsibility of caregiving in general over the women shoulders; this datum agrees with many previous studies’ findings having an ultimatum that the female carries out the primary caregiver role of any sick member in the family [22,23,24]. On the other hand, a study found no gender differences regarding the responsibility of care, well-being, anxiety, nor stressors perceived by mothers and fathers; a possible interpretation of this fact is that both parents in other subcultures might be presented with similar adaptive experiences and role challenges related to psych sociocultural aspects more than demographic features per se [25].
In this study, most caregivers were parents and from the family members; this is explained by the nature of parenting as parents are always concerned about their off springs, which goes in harmony with a research done by [26] Grapsa and his colleagues in 2014, caregivers were mostly people from within the family environment (98%): 52% of them were spouses, 29% offspring, and the rest were relatives. These findings are in accordance with research from Brazil on caregivers of patients undergoing dialysis, as well as researches coming from Europe and America [27, 28].
Regarding the marital status; the majority of cases (23 (76.7%)) and of controls (26 (86.7%)) were married. As for the scientific degree, the majority of cases were of average level education (diploma) but most of controls were of primary or preparatory education which was highly significant. As regards profession, most of cases were housewives or unemployed (25 (83.3%)); as for the control group, most of them were technical workers (22 (73.3%)) which shows high significance in terms of sample matching. As regards monthly income, the majority of controls reported barely adequate income (12 (40.0%)); as for the cases, most of them (21 (70.0%)) reported inadequate monthly income. For the residence, the majority of cases (19 (63.3%)) and controls (28 (93.3%)) inhabited urban areas.
With regard to the socio-demographic factors, these results are consistent with most cases involved in a research where married mothers with basic schooling who were homemakers, lived in a nuclear family, and had low income and whose main support network was the family [29]. Also, the profile identified in Latin America and the Caribbean by [30, 31] where long-term care represents a type of unpaid work performed by women, as required by the multiplicity of psychological and family demands.
Comparison of rate of depression and psychological burden among caregivers in case and control groups
The current study showed that caregivers of children with chronic kidney disease have significantly more depression compared to their matched controls reported more in females (P = 0.048), as 53.3% of them showed moderate depression while only 43.3% of controls showed minimal depression when assessed using Beck Depression Inventory. The majority of cases 80% reported moderate burden and 60% of controls reported minimal burden in Zarit Burden Interview so our findings support the hypothesis that caregivers of children with CKD are affected by depression and psychological burden more than caregivers of a healthy group. This can be explained by highly perceived task difficulty by the caregiver, shortage of medical treatment/nursing services and transportation [32], plus the mandatory sticking to dietary restrictions and lifestyle behaviors affecting the family and social life flow. Also, nephrology team rely on the parents on the daily management of the patient at home, plus having to travel for long distance to attend the weekly clinic visits and dialysis sessions and having to cover some costs of unanticipated management obligations [33].
This is similar to a study that found that 69.4% of caregiver mothers reported feeling pain in the body among which 2.10% had moderate level of burden, whereas a high prevalence of moderate to severe depression and anxiety were reported in (18.4%) and anxiety (47%) of the caregivers respectively [34].
Furthermore, mothers were found to be immersed in various psychological pressures in the journey of their children’s treatment with theme expression like suffering “bewilderment between hope and despair,” “endless concerns,” “agony and sorrow,” and “a sense of being ignored.” [35].
These findings were similar to results reported by various previous studies in which caregivers of patients with ESRD and chronic kidney disease exhibited mild to moderate and severe psychological burden in (49.1% and 33.3%, respectively) with highly significant rate of occurrence of depression among the caregivers especially among females [24], other studies found declining physical health, and experience impaired psychosocial functioning and relationships [27, 36]. Also, a study confirmed that caregivers experience hassles about living with continuous uncertainty, stress, fatigue, disrupted peer relationships, plus external pressures related to seeking treatment like management of the medical regimen, seeking information, transportation, accommodation and finances, complying to the child’s liquid and diet restrictions, and adjusting home duties to medical care [37]. It has been also reported that there is an increased risk for anxiety and depression in caregivers of children with CKD [38, 39].
A study in Peru presented depression in 54.54% of caregivers of children with nephrotic syndrome with difficulty in maintaining daily functioning among which 9.09% had moderately severe depression, 18.18% had moderate and 27.27% displayed mild depression [40]. Another study showed that 43.82% of caregivers of children on hemodialysis suffered from depression with a significant relation between depression and perceived burden and depression among patients with ESRD and their caregivers [41] as well as anxiety, depression, poor sleep, and psychological burden [42]. A Taiwanese study showed that a significant proportion of caregivers had probable depression, and compared to mothers of healthy children, depression was fivefold more common and the quality of life was significantly lower in the mothers of these patients [43].
An Australian study working with parents of children receiving PD explained how parents face status stress through their struggling to accept their child's diagnosis and undergoing traumatizing invasive interventions, feeling guilty when their child has treatment related complications, having conflicts with the spouse and other siblings due to neglecting their needs and through feeling fully dependent on support from health professionals and in need to follow other parents' advice [44].
Despite the fact that there is an absence of studies on families of young children with ESRD, more than a dozen studies have focused on older children with chronic kidney disease. Eleven reviewed between 1980 and 2008 showed increased parental burden caused by caretaking duties, high levels of perceived stress, sense of social isolation, depression and anxiety and uncertainty about the future. Such adjustment difficulties also appeared to be more prevalent among parents with a lower socio-economic status [45].
Risk factors of depression in caregivers of children with CKD
The current study found that the main predictors for depression in caregivers of children with CKD are Zarit Burden Interview and Social Readjustment Stress Scale, which agrees with a study that the mean Zarit scores are positively correlated with depression and anxiety parameters [24]. However, other findings showed that children’s number of medicines and injections, a diagnosis of ADHD in addition to the primary medical condition, frequent primary health care centers and ER visits, and lower child self-efficacy were predictors of increased caregiver burden [46].